According to a story from aawsat.com, a recent analysis suggests that nutrition therapy is an effective tool for slowing the progression of chronic kidney disease and delaying the need for…
Some estimates place the rate of preterm birth as high as 15 million babies each year. This describes a serious global health concern. Many of these babies experience neurological disorders…
According to a story from bioportfolio.com, the biopharmaceutical company Eureka Therapeutics recently released the results of the proof of concept trial for its experimental T-cell therapy ET140202 as a treatment…
According to a story from cnbc.com, a group of volunteers in a clinical study drank a concentrated brew that was filled with bacteria. This may sound unpleasant or even dangerous,…
According to a story from BioPortfolio, the immunotherapy drug Kymriah, a type of CAR-T cell therapy, will be funded by NHS England for the treatment of patients with acute lymphoblastic…
Happy Friday! While the weather this week has been tumultuous, treatment news offers hope to the rare community. This week, we have an announcement about a Scleroderma registry, and PKU…
The United States Food and Drug Administration has granted an Investigational New Drug application for AP101. AP101 is a drug that is being researched as a potential treatment for epidermolysis…
According to a story from Medical Xpress, a team of researchers has discovered a naturally occurring plant compound that exploits a particular weakness found in uveal melanoma, a rare type…
According to a story from Medscape, the US Food and Drug Administration recently decided to approve Lumoxiti. This immunotoxin gained approval for the treatment of a rare form of cancer…
I’m writing this article now because it was something that I needed one year ago and didn’t have. I didn’t know anyone who had moved abroad with Common Variable Immunodeficiency…
According to a story from BioSpace, the biopharmaceutical company Soleno Therapeutics recently announced that it will be updating the minimum age for participating patients in its Phase III clinical trial…
Linda Ramsey had a son named Kevin. In the beginning everything was okay, and Kevin grew normally for a short time. After a few months, his experienced difficulty swallowing. He…
Allison McElvin had a healthy pregnancy and all of her ultrasounds went well, so no one suspected anything about her little baby Cooper. Even when she had little Cooper…
For any football fans here, Matt Millen needs no introduction. For the rest of us who are unfamiliar, Matt is a four-time Super Bowl-winning linebacker who has played for the Oakland…
According to a story from techcentral.ie, the company OpenApp, which is based in Dublin, Ireland, has a developed a new online system that will allow for "virtual panels" of disease…
According to a report by the New York Times, a group of researchers tested the health benefits of bacteria this summer. Specifically, researchers aimed to determine if they were able…
The non-profit organisation CureDuchenne has announced that they have made a $500,000 investment in the company 4D Molecular Therapeutics in order to support the development of gene therapy research. For…
According to a story from The Guardian, the viral disease monkeypox has been reported in the UK for the first time. The first patient was diagnosed on September 8th and…
According to a story from Stat News, The US Food and Drug Administration (FDA) has recently sent a message to the pharmaceutical company Amicus Therapeutics in which they denies the…
According to a story from EurekAlert!, a collaborative team of researchers from the University of Florida and The Salk Institute are using cryo-electron microscopy in order to more closely examine…
A study of an investigational drug called ZX008 in patients who have refractory Lennox-Gastaut syndrome has produced promising results, according to Zogenix. For more detailed information, you can view…
Meet Ethan Ethan Faneran-Burley was diagnosed at two years old with Mucopolysaccharidosis type 6 (or MPS type 6). It's a progressive, degenerative, and ultimately fatal condition. Those with MPS type…
The speciality pharmaceutical company Advicenne has announced that the US FDA has cleared the Investigational New Drug (IND) application submitted on behalf of ADV7103. ADV7103 is an investigational treatment for…
September is Primary Biliary Cholangitis Awareness Month! What is PBC? Primary biliary cholangitis (PBC) is a chronic disease of the liver characterized by a slow, progressive damage to the bile ducts…
I know that it's been months since Kylie Jenner tweeted that Snapchat was over, and the company stock dropped like a billion dollars over night, but if you, like me,…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
